Council for Responsible Genetics
Encyclopedia
The Council for Responsible Genetics (CRG) is a non-profit NGO with a focus on biotechnology
.
As an early voice favoring limiting the use of modern genetic technologies, CRG organized a 1985 Congressional Briefing and a 1986 panel of the American Association for the Advancement of Science
, both focusing on the potential dangers of genetically engineered biological weapons . Francis Boyle
was asked to draft legislation setting limits on the use of genetic engineering, leading to the Biological Weapons Anti-Terrorism Act of 1989
.
CRG was the first organization to compile documented cases of genetic discrimination
, laying the intellectual groundwork for the Genetic Information Nondiscrimination Act
of 2008 (GINA) .
The organization created both a Genetic Bill of Rights and a Citizen's Guide to Genetically Modified Food. Also notable are CRG's support for the "Safe Seeds Campaign" (for avoiding gene flow
from genetically engineered to non-GE seed) and the organization of a US conference on Forensic DNA Databanks and Racial Disparities in the Criminal Justice System.
CRG has issued one anthology of commentaries edited by Sheldon Krimsky and Peter Shorett entitled Rights and Liberties in the Biotech Age.
In 2007, CRG hosted a retreat to refresh the mission statement and determine goals for the future of the organization. The outcome was that CRG should:
to biological weapons, genetic privacy
and discrimination, reproductive technology
, and human cloning
. The publication won the Utne Independent Press Award for General Excellence in the category of newsletters in 2006.
Board of directors:
Former board members:
, which provided $420,000 in grants during 2005-2007.
Biotechnology
Biotechnology is a field of applied biology that involves the use of living organisms and bioprocesses in engineering, technology, medicine and other fields requiring bioproducts. Biotechnology also utilizes these products for manufacturing purpose...
.
History
The Council for Responsible Genetics was founded in 1983 in Cambridge, Massachusetts.As an early voice favoring limiting the use of modern genetic technologies, CRG organized a 1985 Congressional Briefing and a 1986 panel of the American Association for the Advancement of Science
American Association for the Advancement of Science
The American Association for the Advancement of Science is an international non-profit organization with the stated goals of promoting cooperation among scientists, defending scientific freedom, encouraging scientific responsibility, and supporting scientific education and science outreach for the...
, both focusing on the potential dangers of genetically engineered biological weapons . Francis Boyle
Francis Boyle
Francis Anthony Boyle is a professor of international law at the University of Illinois College of Law. Boyle received a A.B. in Political Science from the University of Chicago, then a J.D. degree magna cum laude from Harvard Law School, and A.M. and Ph.D. degrees in Political Science from...
was asked to draft legislation setting limits on the use of genetic engineering, leading to the Biological Weapons Anti-Terrorism Act of 1989
Biological Weapons Anti-Terrorism Act of 1989
The Biological Weapons Anti-Terrorism Act of 1989 was a piece of U.S. legislation that was passed into law in 1990. It provided for the implementation of the Biological Weapons Convention as well as criminal penalties for violation of its provisions...
.
CRG was the first organization to compile documented cases of genetic discrimination
Genetic discrimination
Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a gene mutation that causes or increases the risk of an inherited disorder. People who undergo genetic testing may be at risk for genetic discrimination.The results of a...
, laying the intellectual groundwork for the Genetic Information Nondiscrimination Act
Genetic Information Nondiscrimination Act
The Genetic Information Nondiscrimination Act of 2008 , is an Act of Congress in the United States designed to prohibit the improper use of genetic information in health insurance and employment...
of 2008 (GINA) .
The organization created both a Genetic Bill of Rights and a Citizen's Guide to Genetically Modified Food. Also notable are CRG's support for the "Safe Seeds Campaign" (for avoiding gene flow
Gene flow
In population genetics, gene flow is the transfer of alleles of genes from one population to another.Migration into or out of a population may be responsible for a marked change in allele frequencies...
from genetically engineered to non-GE seed) and the organization of a US conference on Forensic DNA Databanks and Racial Disparities in the Criminal Justice System.
CRG has issued one anthology of commentaries edited by Sheldon Krimsky and Peter Shorett entitled Rights and Liberties in the Biotech Age.
Principles and Projects
CRG "fosters public debate about the social, ethical and environmental implications of genetic technologies." They list three central principles:- The public must have access to clear and understandable information on technological innovations.
- The public must be able to participate in public and private decision making concerning technological developments and their implementation.
- New technologies must meet social needs. Problems rooted in poverty, racism, and other forms of inequality, according to CRG, cannot be remedied by technology alone.
| Selected Issues |
|---|
| Cloning and Human Genetic Manipulation |
| Women and Biotechnology |
| Genetic Testing, Privacy and Discrimination |
| Biotechnology and Agriculture |
| Biowarfare |
| Genetic determinism Genetic determinism Genetic determinism is the belief that genes determine morphological and behavioral traits and do so with little or no influence from environmental factors.... |
In 2007, CRG hosted a retreat to refresh the mission statement and determine goals for the future of the organization. The outcome was that CRG should:
- Explore and document developments in biotechnology through a holistic approach that considers science within a social, cultural, ethical, and environmental context.
- Serve as a global knowledge resource, providing information and education about the potential impact of new and emerging biotechnologies.
- Develop concrete policy solutions to address what CRG feels are emerging issues in biotechnology.
- Mobilize and collaborate with scientists and other organizations to inform the public and promote democratic control of science.
- Expose what CRG views as over-simplified and distorted claims regarding the role of genetics in human disease, development and behavior.
| Current Projects | Description |
|---|---|
| Genetic Bill of Rights | a set of guidelines to aid in the understanding of CRG's viewpoint on the ethical, legal, social, and environmental implications of biotechnology, meant to foster discussion on the values CRG feels are at risk due to advancing genetic technologies |
| Race and Genetics | a project including briefing papers and community workshops on various areas where race and genetics intersect, such as racialized medicine, race in science, and racial profiling in DNA databases |
| Gene Myths | a series of articles disputing what CRG feels are exaggerated and misrepresented ideas about the power of genetic technologies |
| Forensic DNA | a discussion on the use and regulation of forensic DNA databases with concern for privacy and civil rights |
GeneWatch
The CRG publishes GeneWatch, America's first and (according to CRG in 2009) only magazine dedicated to monitoring biotechnology's social, ethical and environmental consequences. The publication covers a broad spectrum of issues, from genetically modified foodGenetically modified food
Genetically modified foods are foods derived from genetically modified organisms . Genetically modified organisms have had specific changes introduced into their DNA by genetic engineering techniques...
to biological weapons, genetic privacy
Privacy
Privacy is the ability of an individual or group to seclude themselves or information about themselves and thereby reveal themselves selectively...
and discrimination, reproductive technology
Reproductive technology
Reproductive technology encompasses all current and anticipated uses of technology in human and animal reproduction, including assisted reproductive technology, contraception and others.-Assisted reproductive technology:...
, and human cloning
Human cloning
Human cloning is the creation of a genetically identical copy of a human. It does not usually refer to monozygotic multiple births nor the reproduction of human cells or tissue. The ethics of cloning is an extremely controversial issue...
. The publication won the Utne Independent Press Award for General Excellence in the category of newsletters in 2006.
People
Staff:- Sam Anderson, Editor of GeneWatch
- Jeremy GruberJeremy GruberJeremy Gruber is a lawyer, writer, and public policy advocate and is currently the President and Executive Director of the Council for Responsible Genetics. He has testified before the United States Congress on genetic privacy and discrimination issues...
, President and Executive Director - Sheila Sinclair, Operations and Projects Manager
- Kathleen Sloan, CRG Conference Coordinator
- Andrew D. Thibedeau, JD, Senior Fellow
Board of directors:
- Sheldon KrimskySheldon KrimskySheldon Krimsky is Professor of Urban and Environmental Policy and Planning at Tufts University, and adjunct professor in the Department of Family Medicine and Community Health at Tufts University School of Medicine. He is a fellow of the Hastings Center, an independent bioethics research institution...
, PhD - Chair - Jeremy GruberJeremy GruberJeremy Gruber is a lawyer, writer, and public policy advocate and is currently the President and Executive Director of the Council for Responsible Genetics. He has testified before the United States Congress on genetic privacy and discrimination issues...
, JD - President and Executive Director - Tania SimoncelliTania SimoncelliTania Simoncelli is a scientist, writer, speaker, Science Advisor at the Technology and Liberty Project of the American Civil Liberties Union , and vice chair of the Council for Responsible Genetics . She has published a number of articles on the social implications of DNA databases in at least one...
- Vice Chair - Peter Shorett - Treasurer
- George AnnasGeorge AnnasGeorge J. Annas is the William Fairfield Warren Distinguished Professor and Chair of the Department of Health Law, Bioethics & Human Rights at the Boston University School of Public Health, School of Medicine, and School of Law. He holds a bachelor's degree in economics from Harvard College, a J.D....
, JD, MPH - Evan Balaban, PhD
- Paul BillingsPaul BillingsPaul Billings is an American doctor, lecturer, researcher, professor, and consultant on genetic information.-Background:Billings began his undergraduate education at UC Santa Cruz in 1970 and then transferred to UC San Diego in 1972...
, MD, PhD, FACP, FACMG - Sujatha ByravanSujatha ByravanSujatha Byravan is Senior Fellow at the Centre for Development Finance in IFMR where the focus of her work is on adaptation to global warming. Her interests are in the broad areas of science, technology and development and are grounded in her technical background and education in the biological...
, PhD - Rayna Rapp, PhD
- Lola Vollen, MD, MPH
Former board members:
- Francis BoyleFrancis BoyleFrancis Anthony Boyle is a professor of international law at the University of Illinois College of Law. Boyle received a A.B. in Political Science from the University of Chicago, then a J.D. degree magna cum laude from Harvard Law School, and A.M. and Ph.D. degrees in Political Science from...
, JD, AM, PhD - former board member - Ruth HubbardRuth HubbardRuth Hubbard is Professor Emerita of Biology at Harvard University, where she was the first woman to hold a tenured professorship position in biology. -Biography:...
- former board member - Claire NaderClaire NaderClaire Nader is a social scientist and a sister of Ralph, Laura, and Shafeek Nader.She holds a Ph.D. in political science.During the 1960s she worked with Alvin Weinberg at Oak Ridge National Laboratory, where she conducted civil defense research related to the potential societal aftereffects of a...
- former board member and chair
Funding
A major source of CRG's funding is the Ford FoundationFord Foundation
The Ford Foundation is a private foundation incorporated in Michigan and based in New York City created to fund programs that were chartered in 1936 by Edsel Ford and Henry Ford....
, which provided $420,000 in grants during 2005-2007.